Skip to main content

PFTs and Clinical Trial

I get so frustrated with myself when I forget to finish a blog.  Here's one I started last week sometime...sorry for the delay :)

I'm beyond excited to be a part of a clinical trial!  I don't mind being a guinea pig :)  I've gone twice now and have 1 more visit left.  On the first day, I rode a bike and was hooked up to a bunch of machines measuring my heart rate, breathing, O2 count, etc.  I performed a max test, meaning I pedaled until I couldn't pedal any more!  I could have kept going (and I'm frustrated I didn't go longer) but my legs were exhausted, they couldn't pedal anymore...the lungs were feeling great.

So on my second visit, I worked at 20%, 40% and 60% of my max.  I did some PFTs, and was hooked up to all the monitoring devices like the first time.  Then, I had an ultrasound on my arm, so the doc could see my arteries and how the blood was flowing.  It was pretty cool!   I was given a few meds and after a 2 hour break, we did it all again.  They also tried to draw some blood, but my veins refused to cooperate and they got nothing!

I am due for my third visit in the next couple weeks and we'll do the same thing as my second visit (and they are hoping for some blood that time!).

Also, I went back to the doctor for some PFTs on July 20th to see if we could narrow down if I'm asthmatic - which might be causing the chest tightening.  I drug my friend Amanda along, she was quite the trooper!  I had a good bribe since we left for the beach right after for a long weekend.  The lung functions were good - after having a treatment of Albuterol, I only went up about 3%, so nothing dramatic to indicate Asthma - yay!  But, back to square one as to what's going on with the chest tightness.



Comments

  1. Did you ask your doctor about trying to use hypertonic saline? I know I posted this before on your prior post but just wondered if you got a response.

    ReplyDelete
  2. Thanks for sharing! Good luck with the trial and hope you get some answers regarding your chest tightness.

    ReplyDelete

Post a Comment

Popular posts from this blog

SmartVest Review & CF Appointment

Well, here is the long awaited official review of my new SmartVest SQL.  I don't have any current or updated vests to compare this too, so my feed back is based upon what I like/dislike versus the old and out-dated vest.

Pros:
Weight - it is MUCH lighter than my ancient Hilrom Vest.  By all means, it isn't light but definitely a great improvement from my older model.  I can at least carry it myself!Comfort of vest - the fabric is much softer and less scratchy when wearing it.Technology - it has a digital screen, so I can set the time and know for sure how long I'm using it (the old one had a knob to turn).  Also, I can set different programs based on how long I want to use it, etc.  It's quieter!!  Will still doesn't enjoy watching TV with me while I vest, but I don't have to turn the TV to its max volume!  And, the dogs aren't scared of this one as much!There is only 1 hose...so I'm not tangled up :)And it comes with a rolling case (that looks like a re…

CF Updates

Greetings friends!

I had the pleasure of going to my quarterly CF appointment on Tuesday.  It was originally scheduled for 11/15 but being that my sinus funk is still lingering around, I wanted to move it up a bit.  (the original funk started here)

I finished my round of Cipro on 10/29.  And still had a head full of congestion, sore throat and ears. Bummer.  I thought I was starting to feel better for a split second, but it didn't last.  Thankfully, my lungs were still feeling good :)  We were at our cabin in WV that weekend and I skipped my vest and HTS, but thankfully didn't suffer.

So, I headed in to the doc on Tuesday.  My PFTs are holding stable so that makes me happy!  More on that in a minute.  During my exam, she could see there was still fluid in my ears along with my red throat.  Plus my face was super puffy and my eyes felt as if they were going to pop out of my head.

So, the plan of attack is this:

1) Take Levaquin 750mg for 14 days
2) Get back on my Claritin dail…

CFF Blog Post

I was honored when the CF Foundation approached me to write a blog about our decision to not have children.  As a reader, you know how much we love our dogs and feel fully blessed by having them.  So, why not share it with the whole CF community?!!

Check out the blog post here.


I was shocked to see how many responses appeared on the FB.  We had likes, loves, wows and sad faces...thankfully not mad faces.

I enjoyed reading the comments...of course most everyone was very supportive and shared their decisions on having or not having kids.  But in typical social media fashion, people take things to the extreme or can't keep rude thoughts to themselves.  So, I wanted to take a minute to give some feedback.


1) I'm 99% sure we would have came to this decision even if I didn't have CF.  Every couple makes a decision whether or not to expand their family.

2) We aren't irresponsible in our delay of having Will tested for the genes...its called birth control people.  And EVERYONE…